Emily is a young woman, 23 years old, living in Greece. In 2012, she was diagnosed with Guillain–Barré syndrome (GBS). This experience changed the way she viewed life forever. She designed the life she loved, and became a successful clothes designer, she has a wonderful relationship and sees life with enthusiasm! Her positive spirit and example is an inspiration.

The journey to the diagnosis and hospitalization

“The story goes back 2 years ago. I started searching for a job as soon as I finished my fashion designer course but all the answers I was getting were negative and the money was running out. I didn’t want to rely on my parents anymore, so I met with my teacher in Fashion History that was also working in nursery schools and told her all about my situation. She offered to help me with finding a job in one of the nursery schools and so I applied and they accepted me straight away.

I started working sometime in October of 2012. It was a nice and easy job, but I had to take two buses to go there and two to come back home, and it was taking me a long time. I wasn’t eating properly, I lost some weight. I started feeling rather weak and it wasn’t long after I started working when I got a cold. I needed to apply for national insurance and since I was working with children, I had to go to the hospital and receive a vaccine as all the people working with children do. Usually you need to wait 10 years since you have the first vaccination. When I checked my health book I saw that I didn’t have the 10 years completed yet so my body wouldn’t be ready to accept the second one. You also need to be 100% healthy to get vaccinated and I was down with a bad cold. But the requirements for me to get paid were to receive the vaccine and then register for my health insurance.

I informed the doctors that I had a cold but they said that this was not a problem and so I received the vaccination. However, the next day I started feeling worse and I thought this was because I wasn’t eating well.

Two days after I had the vaccination, I tried to pick the alarm next to my bed, but I felt like I couldn’t move my right arm. I couldn’t pick the alarm that was a few centimeters away from me. My first thought was that I possibly slept over it. I started getting dressed for work but I could barely feel my arm. I asked my mum to help me as it was getting late and I didn’t want to call off sick the last minute. I thought I would ask the other girl that was working with me for help and if I didn’t see any improvement I would go to a doctor.

Unfortunately, the other girl didn’t come to the school and I had to take care of all the children by myself. I remember it was not possible to move my right arm at all by the end of the day. I was changing the children’s diapers and taking care of them using only my left arm. I explained to my employee that I wasn’t feeling well but he didn’t let me go. He asked his mother that was living nearby to come and give me some help.

The way back home, when I was on the bus I started feeling like my right foot was not stable enough. When I arrived home I could barely walk my way back. I was feeling really weak. My parents called the doctor, and they took me straight to his office. I had to hold my mum in order to walk. The doctor did some examinations and he said that I might had a stroke while sleeping as the paralysis was mainly in my right side. He told me to go to the emergencies and get some further examinations.We went to the hospital straight after the doctor. I knew a few people working there since I did some work practice there in the past. They asked me what happened and I tried to stay calm and laugh, but, I was scared to tell the truth.

They didn’t have any beds in the neurology section so they placed me at the ophthmalogy one. I remember they forgot about me the first day. The doctor appeared only the next day late in the afternoon with a few students that were doing their training. They were saying things i couldn’t understand, i felt like i was taking part in an experiment. At the end of the day they took me to the neurology department. It was a large room with 8 beds. They were visiting every day but they were never saying anything to me, just that they were doing some tests to see what exactly was happening to me. I remember they were scratching my foot with a key to test the nerves and the reflections of my body.

Meanwhile, the left side of my body paralysed too. I couldn’t move at all, I couldn’t go to the toilet by myself, neither to stand up or do anything. I was lying in my bed all these days. I started losing my patience and I was psychologically knackered. I was very scared, I was crying almost all day. Every night, when everybody was asleep I was asking myself why everybody knows what they have and I know nothing about my condition. They noticed on my arm the vaccine as it seemed like infected and they said that I might had tuberculosis. After a long discussion they concluded that it was infected because I had a cold and I shouldn’t receive the vaccine in the first place.

I went through so many tests, without even knowing what the diagnosis might be. One day the doctor came and said that they had to give me a lumbar puncture. I learned that this doctor was always following this routine with his patients. I was in a complete shock, I didn’t want to go through this and I refused. But the doctor didn’t like it and got angry with me. My dad tried to calm him down. I finally had the lumbar puncture but we had to wait a long time for the results since the laboratory was in another city. All these happened during the first week of my stay in the hospital. I still didn’t have a diagnosis for my condition. Many doctors were visiting and each time they were suggesting a new test for me to do. Some doctors suggested I should have a test with electrodes, to test the nerves of my body on the computer system.

And all these days they were giving different scenarios to my parents. They even said that I might have multiple sclerosis. This was something really painful for my parents to hear. But they never said anything to me because they didn’t want me to get more stressed than I already was. My parents never showed me a sign of stress or worry. They were keeping it silent to themselves. My mum was helping me to get dressed, have a bath or brush my teeth. It was a tragic situation really. They put me in a wheelchair to do the next examination. The doctors did the electromyography to me. They examined my legs, my arms and my cyst as it was the next part of my body that could get affected.

At the same time I had many problems with my relationship. He didn’t care much about me, he came for a couple of visits to see me in the hospital. I decided that I needed to do something about it when I get better.

So, I was finally diagnosed with Guillain–Barré syndrome, which is a rare condition. The doctors said that the diagnosis rate is 3 in 100.000 people. I had It for over a year as they said, its signs were like a common flu, you couldn’t really notice that it was something more serious than a common cold. They said that the vaccination that I received helped the symptoms of the syndrome get worse. But till then they couldn’t figure out what exactly was happening to me. And it started infecting my cyst as well. The initial stage of the condition is to affect the legs, arms and then it affects the cyst, the lungs and if you don’t treat it immediately you die. It is a very dangerous condition if you don’t act quickly. But I suppose that nobody would let himself/herself stay without treatment when you see your body paralyzing.

The antibiotics and the rest of the medicine were intravenous so I had to stay at the hospital one more week. The feeling was irritating, it wasn’t painful but totally disturbing. It was like my nerves were rebuilding from scratch. Like there was electricity going through my whole body. The feeling was getting worse during the night when I wanted to relax. But I got used to that the 2nd day.

The atmosphere was a bit heavy. I remember there were 4 people holding me to get a blood test. I had so many tests that my arms were bruised. But I was trying to maintain a positive spirit.

Getting back Home

When I got out of the hospital I could see some progress. I could walk even though I wasn’t stable. But I went back home walking. I needed someone to give me a hand but I was much better. And they told me to come back in a month to check my progress. They told me that I had to stay at home till then and avoid any contact with other people as my immune system was quite low. I had to wear a mask when I was around others. I couldn’t even go out in the balcony unless it was sunny. But it was December and it was cold and humid, so I stayed in, the whole time.

During this one month things were a bit difficult, depressive. I was watching TV most of the time as I had nothing more to do. That was the time when I realized how a bad influence the television is. It fills your head with all sort of negative things. And it makes you want to spend money and consume and buy things. I remember I wanted everything, an iPad, a new computer, a mobile phone…

Not many people knew about my situation. Only a couple of friends, the very closed ones and a couple of my mum’s friends that they knew me since I was a child. We didn’t have many visits at home as it was not appropriate for my recovery. It only happened a couple of times, but I had to stay in my room and when people were gone, my mum had to open all the doors for the air to circulate. But I was getting better day by day. I could feel my legs stronger.

I went for examination to the hospital after a month and they told me that I still had to be careful and take care of myself. But they could see that my recovery was 80% successful.

My birthday was very close and so my boyfriend came for a visit but my parents were not happy about that as they were scared that it was not helpful for my recovery. He didn’t treat me nice while I was at the hospital too, so they were not happy about my relationship. They were saying that you are about to celebrate your 21 years and we hope you are well enough to celebrate your 22 as well.

Change of Perspective of Life

The truth is that all this time I did a lot of thinking and I wanted to take decisions for what I should do with my life and stand stronger than before.. I thought that my relationship was not a good one for me. I wanted to have people in my life that were positive and supportive. I never expected people to give back, but I wanted them to be by my side during difficult times. So I decided to stop connecting with people that didn’t do me any good. I decided to live my life in a different way. I think that this experience made me stronger and more mature. When I started going out when I was fully recovered, others were saying that I was talking and acting in a different way than before. I knew that I had changed a lot.

When I was at home I was spending a lot of time in front of my computer. I started chatting with a guy I knew since I was a teenager, who was very supportive to me. I told him about my experience and my hospitalization and he seemed very understanding. I stopped my other relationship in the meantime. The guy I was chatting with was keeping me a good company, he made me laugh and I was feeling good every time we were talking. I realized that I started having feelings for him.

I also started thinking about finding something to do as a job. I saw on the internet two girls designing and selling their own clothes. I talked to my mum about it. She didn’t believe me at first but I really wanted to go into this area, and so I said I will give it a try and see what happens.

So I started making clothes. The first items were rather simple and I asked my friends to come to my house and try them on. I created a facebook page and I started posting photos of the clothes. I was very happy as I was doing something I learned. I was one of the few people that I was doing the thing I studied. It is a sad …but it is true that most people don’t practice what they study and love. I was proud of myself.

I was thinking that I had a bad experience with my health but through this I grew into something better. I was more mature, I learned to let things go and to understand others better.

And I started meeting people that were very helpful to what I was doing. For example, I met people that helped me understand better financial issues, I had friends helping me with modeling my clothes. And I started having money to develop my business and save for holidays as well.

So I went to Corfu for holidays in July to see my grandma. I also met with the guy I was chatting with while I was recovering. And since then, we are together in a happy relationship. The distance is not always good but his optimism makes me optimistic and positive too.

Life’s New Philosophy

I believe that we can fight anything difficult that comes our way. When I was ill, I was feeling very low and I was seeing all the girls wearing nice outfits, looking happy and I was thinking that I might never walk again in my life. But with patience and courage we can overcome anything.

You should remind yourself that you may not feel strong now but the difficult time will pass.

And I realized through this that I was brave. I thought that I would be weak crying all day and feeling miserable and angry about what have happened to me. But I didn’t do this. I stayed strong.I think that everything happens for a reason and my experience is a strong example and I want to go out to the world and shout loud that we are stronger than we think. Bad things happen, and my parents were very sad and stressed, but they tried their best to help me feel stronger.

From one bad thing, I gained 10 good things. It helped me understand life better, to clear a few things out of my life, and realize what I truly wanted to do with my life. So when you go through a difficult situation, you should find the courage and strength to say that ok, I will go to bed and tomorrow when I wake up I will only do things that make me happy. Even little things, like watch a funny video on Youtube and laugh, to talk to a person that you know that will listen to you and understand you, like my boyfriend did for me. You may lose some things, but you will gain more and you will get the knowledge of what makes you truly happy. And you will re-gain the time you lost.

I feel very lucky. I sometimes have problems in my job, and I don’t have the perfect relationship with everyone but that’s alright, you can’t make everyone happy.

Maybe we need to experience a miracle to realize how strong we are. Even in the most difficult situations, if you say to yourself that you will fight till the end and try to make things better, it may be difficult and you may get hurt, but that’s ok, you will do your best to change it, then you will see that you have all the power to change things and make yourself truly happy.